Answering back all the time! Help please.

[Honour]

Good morning all. I really am beginning to feel I’m not the nice person my friends and I think I am .
My husband was diagnosed with vascular and Lewy body dementia 5years ago and yes, I believe the tablets have helped but in the terrors he started attacking himself and it could take an hour to re settle him. I then put him onto Ibuprofen 1 at night, my reasoning is he gets pain in his hands and arms, ? Arthritis! And we know the brain is inflamed so he had the 2 sets of inflammation . Result! No more terrifying night terrors, yes he still has times of waking thinking strange things but he himself is not so frightened. The Dr does not stop me doing this but, understandingly, isn’t prepared to prescribe it. My decision. Things at night are now much improved.
BUT where I really loose my rag , and I mean really, is that no matter what I suggest he does to make life easier he has an answer back, just like a child, it is non stop. His walking is very bad and to get him to use a stick around the house! ‘Why should I,I don’t have to l don’t need it’ the latest is that I have been given a raiser for the loo because he pulls himself up by using the towel rail which is now loose in the tile I have a suction grab handle and put that up ( doesn’t use it) now he wants the raiser removed as he doesn’t like it and ‘I’ve been using the towel rail for 10years so why should I stop now’!!
This and many many more instances are really getting me down and I’m not sure how to stop it, reasoning doesn’t work and sometimes I’m afraid of my reactions. Any ideas anybody please.

 

[Cat27]

Have you seen this thread Honour? https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[canary]

My OH has a proper grab rail screwed into the wall beside the loo to help him get up (he wouldnt have a loo riser either)
The grab rail looks very similar to a towel rail. Could you replace the towel rail with a proper grab rail that would take his weight and not come loose? You could even hang towels on it!!

 

[Honour]

Unfortunately there is not enough wall space for another grab rail what with the loo roll,and the radiator, which the towel rail is above. It was very strongly attached in the first place. The shower cubicle is to the left hand side and the basin to the right. Very small room about 6x8. Thanks for the reply

 

[canary]

Unfortunately there is not enough wall space for another grab rail

I was thinking of removing the towel rail and putting a grab rail in its place. Proper grab rails (not suction ones) are much more firmly attached as they are designed to take someones weight. I thought that if you did this he might not notice the change, but it would be safer for him.
You could get the OT to organise this, but I organised a bathroom fitter to do it for me, it didnt cost too much and I found it less faff.

Edit to say that if you install a stainless steel one and put it horizontally it will look just like a towel rail.

 

[Honour]

Thanks for replying Cat and I doubt it was you personally who wrote those things as I have a copy of the first part that was given to me by ‘the team’ The second part has just made feel absolutely awful and failing in my duties. It seems to be written by someone in an office who has heard many stories from Carers and then , without facing these desperate daily problems have thought of platitudes that should help. Yes, it all sounds lovely but, to me, far from realistic at the time that the problems are happening. I even managed to discuss them with my husband who also agreed that most were unattainable at the time of the incident. Not only would the patient, who now has a different personality, but also the career would also have to undergo a change of nature which could cause confusion In itself as their personality changed !! Mine certainly would!!
Thank you for your thoughts and I’m sure there are people who have somehow gained empowerment from those words. Just not me ! I just feel depresses. X

 

[Cat27]

Thanks for replying Cat and I doubt it was you personally who wrote those things as I have a copy of the first part that was given to me by ‘the team’ The second part has just made feel absolutely awful and failing in my duties. It seems to be written by someone in an office who has heard many stories from Carers and then , without facing these desperate daily problems have thought of platitudes that should help. Yes, it all sounds lovely but, to me, far from realistic at the time that the problems are happening. I even managed to discuss them with my husband who also agreed that most were unattainable at the time of the incident. Not only would the patient, who now has a different personality, but also the career would also have to undergo a change of nature which could cause confusion In itself as their personality changed !! Mine certainly would!!
Thank you for your thoughts and I’m sure there are people who have somehow gained empowerment from those words. Just not me ! I just feel depresses. X

Oh I’m so sorry. I didn’t want you to feel worse.
I really struggled with compassionate communication & messed up almost daily.

 

[Honour]

dont Worry Cat I realise you didn’t mean to make me feel worse infact knowing you mess up too makes me feel somewhat better. People who don’t live through this really have no idea, especially family!! Strangely most of my friends most of whom are older than me , either have had partners with dementia or they are still going through it . It really does help talking to people who know, thank goodness for friends I say.

 

[Izzy]

Just wanted to say I’ve been there too. When I was caring for my mum and my husband the contented dementia book was hurled across the room by me at one point - not at them I hasten to add!

It’s so hard and unless you’ve been there you can’t understand how hard.

Wishing you strength.

 

[Hazara8]

Good morning all. I really am beginning to feel I’m not the nice person my friends and I think I am .
My husband was diagnosed with vascular and Lewy body dementia 5years ago and yes, I believe the tablets have helped but in the terrors he started attacking himself and it could take an hour to re settle him. I then put him onto Ibuprofen 1 at night, my reasoning is he gets pain in his hands and arms, ? Arthritis! And we know the brain is inflamed so he had the 2 sets of inflammation . Result! No more terrifying night terrors, yes he still has times of waking thinking strange things but he himself is not so frightened. The Dr does not stop me doing this but, understandingly, isn’t prepared to prescribe it. My decision. Things at night are now much improved.
BUT where I really loose my rag , and I mean really, is that no matter what I suggest he does to make life easier he has an answer back, just like a child, it is non stop. His walking is very bad and to get him to use a stick around the house! ‘Why should I,I don’t have to l don’t need it’ the latest is that I have been given a raiser for the loo because he pulls himself up by using the towel rail which is now loose in the tile I have a suction grab handle and put that up ( doesn’t use it) now he wants the raiser removed as he doesn’t like it and ‘I’ve been using the towel rail for 10years so why should I stop now’!!
This and many many more instances are really getting me down and I’m not sure how to stop it, reasoning doesn’t work and sometimes I’m afraid of my reactions. Any ideas anybody please.

It is a fact and one which is not easily taken to heart for very obvious reasons, that dementia does change the brain and it does so in such a way as to make communication a genuine challenge. There are specific features which arise in specific dementias and this certainly applies to Lewy bodies and Vascular dementia as well. If we as fortunates, free from dementia, were to find ourselves suddenly prone to a complete lack of understanding when confronted by a simple question and in that confusion were to be met with yet another question or indeed a challenge to our
confusion by nature of a raised voice or a sense of frustration in the questioner, whilst at the same
time being in some way reminded of that lack of understanding and not knowing which way to turn to alleviate that bewilderment, on top of which anxiety, perhaps innate fear of the unknown and maybe some hallucinatory events combined, and so on and so forth -- then we might then scrape the surface of just what it TRULY means to be a victim of dementia. We have time to think, to formulate to work things out and we can confront an argument with our own logic, or reasoning or simple denial - all based upon an intact brain. The diseased brain is a vastly complex entity, those billions of neurons no longer behaving as they once did. Amidst all of that, is a real person, at times a frightened and lonely person, lost in a kind of bottomless pit. And yes, there are no boxes to simply tick, nor simple rules by which everything becomes as right as rain again, but there is a fundamental truth which is, alas, undeniable whether we like it or not and that is, WE HAVE TO CHANGE as the one with dementia most certainly cannot. We HAVE TO adapt,because to try and combat dementia (and all the behaviours we meet each and every day) is pointless and counter productive and potentially, harmful. This is, of course, an immense task, because it really demands complete attention and total commitment.

I have seen family members so frustrated by the behaviour, language, aggression displayed by a loved one (in Care) that they also 'lost their rag' for a moment. The results were even more dramatic. I have seen professional nurses who have been trained to deal with psychiatric patients, who once confronted THEMSELVES by a family member compromised by dementia, undergo a 'learning curve'. None of this is at all easy, it can break hearts and ravage minds of those who are caring. But unless one is really prepared to address this all so demanding role as carer, in the light of "I need to change", which means not your psyche but your approach to a thing which knows no reasoning and which will ALWAYS WIN the argument, then one is treading a slippery path with all its inherent dangers.

With warmest wishes.

 

[jaymor]

@Honour, everyone on the forum is living with dementia are has lived with dementia. Nothing about dementia is easy and you are right, no one can understand until they have first hand experience.

Compassionate Communication makes sense but when you are in the thick of it it does not come easy. If I managed one of the suggestions just once a week I felt I had climbed Mount Everest. It all makes sense just not easy to carry out because we don’t have time to stop and think. When my husband was being grossly unreasonable, obstinate and verbally abusive I would just say “ I’m sorry you feel like that “ and walk away.

I got so much from the forum, from members who were either going through or had been through something similar. It does not sound right to say I felt better because someone else was suffering what I was suffering but it’s true, when you know the difficult behaviour you are dealing with is common and you are not alone, it does make you feel better.

I hope we can all be of help along with your friends.

 

[NORTHSIDE]

Hi Honour, I think I know exactly where you are coming from. When friends tell me 'i don't know how you do it, your so patient,' I feel such a fraud as, despite my best intentions at the start of every day within 2 to 3 hours I've just about had enough and can no longer be quiet and just walk away.

The sarcastic remarks just keep coming, 'would you like to brush your teeth' says I, 'yes I have got teeth' comes the sarcastic reply with much sighing and eye rolling, 'your breakfast is on the table' reply, 'YOUR BREAKFAST IS ON THE TABLE' it sounds so insignificant but after 2 or 3 hours of trying to be nice one further little sarcastic comment can be the proverbial straw to break this camels back. Don't beat yourself up about it, you're doing a far better job of looking after your husband than anyone else could possibly do. Best wishes and take care of yourself.

 

[kindred]

Thing is, dementia gets us on the run. I used to try to placate it, felt I was a slave to madness most of the time. Can't really even get ahead of it. In the end I understood I have to try to build a few minutes of my own life alongside it, somehow ... we are not saints, we are not mental health nurses. We are doing all we can in horrible, diabolical conditions. We are good people.